Sarah has recently entered a “tear the page” phase with her books. It’s annoying to me, but she seems to get some sense of accomplishment from it. She’s torn many pages and Brian diligently fixes them with packing tape. Somewhere along the line, Sarah started looking at every torn page while saying, “Daddy fix it… with tape!” She has such enthusiasm for the proclamation. And she emphasizes the “With TAPE!” part every time.

I was driving home alone after dropping both girls at Delrey on the morning of Catherine’s most recent IEP meeting (they were nice enough to let us put Sarah in daycare for the day – and the meeting went relatively well). I took a corner too close to the curb to handle the custom-lowered floor. I wrecked our six-week old van on the ramp door side. Ugh! The ramp wouldn’t deploy. The door barely closed. I didn’t even want to tell Brian.

Of course, I did, and the next morning when we had to all load up for the trip to school, Sarah patiently stood outside the van and said, “Wait!” because she knew the ramp should come out of the door. It didn’t. We started to move toward the van, and again she yelled, “Wait!” but we had to keep moving so we wouldn’t be late.

I tried to explain that I had broken the van and the ramp wasn’t going to deploy. She looked so confused. She kept wanting to wait, so I finally had to pick her up and put her in her car seat so she could ride to school with Catherine. She struggled and screamed, and I finally said, “Sarah, listen to me.” She usually looks at me when I say that, and she did this time, too. “Mommy broke the van. Mommy broke the ramp. It doesn’t work anymore.”

She looked up at me with big brown eyes and in a split second said, “Daddy fix it! With tape!”

My body was laughing, but my soul shed a tear. Some things just can’t be fixed… With tape!

My mom sent me an article about a girl in Charlotte who has a rare implication from jaundice. She was getting ready to have a surgery that would create deep brain stimulation to hopefully help control her chaotic movements and help her learn to talk. Prior to surgery, she was a lot like Catherine – but she smiles.

I read this article the same way I do a lot of articles like this one, with a panel of questions.

Is there anything I can learn that will help Catherine?

Should we do something so public to help Catherine?

Do they have the best surgeons? Should we consider going there for some procedure? Same with therapists.

And ultimately, is this kid enough like Catherine to even really matter to me?

Well, in this case, she was except for that one important point that nagged at me the whole way through the article, which got nearly two full pages in The Charlotte Observer. In photo after photo, Lexi was smiling. And the doctors and nurses and family members surrounding her were smiling. And you could tell they played off each other’s energy with that smile. In fact, the mom even talked about how the smile was what kept her going.

So what about those kids who don’t yet smile? Catherine doesn’t smile. Not really. She has a facial movement we refer to as a smile, but unless Brian is rubbing her head, she doesn’t really do it in response to a social interaction that one would normally expect to cause a smile. She doesn’t do it when she hears my voice. Nor when I hold her. Nor when I tell her how beautiful she is. Her affect is nearly always the same. When Catherine smiles, it’s usually in response to some physical sensation that must feel good to her – or be so intense that she can’t help the facial response.

And so I concluded the article with the last point that usually rattles around in my head, probably unfairly so, but this is an honest admission: Do they have it as hard as we do?

There, I said it. Well, I wrote it. And right now, no one even knows this blog exists, so no one may ever read that. Or I may open up with just that must honesty about life with a child that doesn’t smile. I think if I could have one single thing happen, I would have Catherine smile.

I don’t say that to take anything away from the struggel the Haas family faces. You can follow the story at their Caring Bridge site. Lexi really is a beautiful girl, and I wish the very best for her. Who knows, maybe they are paving the way for Lexi to talk and Catherine to smile one day.

I’ve been reading a free copy of Exceptional Parent, a magazine for the parents of special needs kids. It’s quite impressive. The articles are well researched and documented, and they provide deep looks into the lives of living with a kid with disabilities.

An article in the June, 2009 issue titled, “The Basics of How to Reveal Epilepsy” by Robert J. Mittan, PhD caught my eye. Catherine has epilepsy. We typically refer to it as a seizure disorder, but it’s the same thing – epilepsy. I’ve usually just told people she has it. Never thought about the care I should take in divulging that piece of her medical history. Never thought about the fear others might experience wondering if she’ll have a seizure in their presence. Maybe I should rethink it. Maybe not.

A paragraph early in the article really struck me:

When you talk about your epilepsy or your child’s epilepsy, never blame the other person for their misconceptions or ignorance. No one chooses to be ignorant, and we all like to take pride in our own intelligence. If you somehow suggest that the other person is ignorant, you will be insulting them and their intelligence. There is no quicker way to get them to stop listening and learning from what you have to say. All they are truly showing is their cultural training and the fact that they have not yet had the opportunity to begin thinking about epilepsy for themselves. Give them respect and room to start thinking for themselves.

This strikes me as something we should all do regardless of the situation. If we consider the cultural background of a situation rather than the “rightness” or “wrongness” of it, many things lose their stressful significance. If we just consider that someone hasn’t yet been exposed to this experience as part of their culture, we become more patient and open to explaining our views.

Brian and I have backpacked around the world. Thankfully, we opted to do this before kids, and I think it’s one of the reasons I’m able to accept our road in life – I got to do my lifelong dream already. We spent hours asking questions of people we met seeking to learn more about their culture and seeking to understand them better. And we spent hours explaining the US and how and why it works (or sometimes doesn’t, frankly) in our country. We exchanged this information in an open environment motivated by curiousity – not judgment, not fear, not justification. We just sought to understand each other’s ways a bit more.

Frankly, I would rather someone ask me questions about Catherine (most days) than just stare from afar. I hadn’t yet thought of our life as one of a different culture, but I like that imagery. We each have lives of a different culture. Maybe we can approach each other like that.

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…